Follow up EEG and possible nystagmus surgery

I remember growing up we had a neighbor who had seizures.  I remember his mom running to our house frantically asking my dad for help (he's a pediatrician).  I remember thinking in later years that seizures didn't really seem like a big deal (perhaps because my dad was always so calm and supportive).  I learned that you keep the person from getting hurt and talk to them and usually all will be ok.  It wasn't until I had my own child with seizures that I started thinking about what would happen if she was at the top of the playground equipment when she started seizing.  Or whether this meant she wouldn't be able to drive a car.  And I definitely didn't think about whether she would soil her clothes in her classroom as her friends looked on horrified.

So many times in the last six plus years I've thought about our journey and the journey of so many around us.  I've spent hundreds of hours in waiting rooms reflecting on our situation, wishing we weren't facing it and yet seeing others with similar or more challenging situations.  We feel so blessed with how well Reagan is doing, but it doesn't change that we want her to be able to be off her seizure medications.  Although truthfully it gives peace of mind to know she is medicated (and therefore they are controlled).  Coming off medications is frightening.  But we remain hopeful that by giving her brain extended periods of time that are "quiet" that one day it will forget about the scar tissue and stop sending signals to that area so that the seizures are dormant.  And that is precisely why Reagan had her follow up EEG Friday, April 15th.  Not a fun way to spend her school vacation day, but it allowed us to spend the day with her.  She was required to limit sleep to only 4-5 hours Thursday night.  So Johnny took her to Wal-Mart that night to kill some time and then came back and watched movies.  He kept her up until about 1am and they both went to bed.  I set my alarm for 5:30am and was up with her in the morning.  The tech was very good with Reagan and everything went smoothly.  She had the electrodes glued to her head and then the machine started reading her EEG.  She had to do some counting forward and backward and then watched a series of very bright flashing lights with the room dark.  She was then asked to fall asleep.  Overall it went smoothly and we're anxious to get the results.  I called today but they still haven't been read.  The nurse suggested I call again at the end of the week to see if they've been read yet.  Prayers that I have good news in my next post!

Monday we also had an appointment for Cole with the ophthalmologist, Dr. Jeffery.  It was his routine 6 month follow up with dilation.  There is a test they use with a machine where the child places his chin on a ledge and his forehead against another guide while looking into a small view finder.  The machine measures his vision.  This was the first time the tech was all able to get a reading using this machine.  Historically they've had to rely completely on the prisms they hold in front of his eyes to determine his vision.  Unfortunately, his nystagmus prevents the machine from "seeing" into his eyes.  This time it was able to get a reading, but it was extremely variant since it would catch his eyes at different stages of the shaking.  Regardless, this was a good improvement in my opinion!  The appointment went well and although his prescription did change, she said he overall looks very good.  Dr. Jeffery did bring up the nystagmus surgery again, called a tenotomy.  She said we should consider the surgery but suggested we visit the leading nystagmus specialist in the country, Dr. Richard Hertle, at Akron Children's Hospital in OH for a second opinion.  Dr. Hertle works with Dr. Burnstine who was the first to perform this surgery.  Dr Jeffery said most kids with nystagmus have very jerky eye movements but Cole's are more of a long pendulum swing.  She's uncertain how effective the surgery will be but thinks the testing Dr. Hertle will do may give us more information.

"The procedure – which involves detaching and reattaching horizontal eye muscle to the same location – is intended to trick the brain and slow down the uncontrollable, darting eye movement," said Dr. Burnstine, who was the first physician in the world to perform the surgery. "It sounds simple, but it seems to work. It's like rebooting a computer." On average, patients have experienced a 20 percent improvement in their central vision and about a 50 percent improvement in their peripheral vision.

So it's off to OH to get more information and see what Dr. Hertle thinks. I've "talked" to several people (through Facebook) who have been his patients (or their children have) and the reviews are excellent.  I called his office today and have completed the paperwork.  We are now on a wait list for an appointment.  Since we are from out of town, they book a 3 day appointment - there is extensive testing Wednesday and if we and the team believes surgery is warranted then surgery is the following day, Thursday.  Friday there is a post op appointment and then we head home.  The hope is that we will get an appointment sometime in July or August but it's now a waiting game.  We are obviously somewhat conflicted about this news and possible surgery.  With any surgery comes risk...but I've conversed with moms who have had kids who were legally blind and unable to ever drive a car and after this surgery have been given a second chance at living a more normal life.  To give you perspective, I took the kids to the circus Saturday night and was able to secure 3rd row seats.  We were about 20 minutes into the show when Cole said, "hey mom, is the circus going to start soon?"  My heart sank and it broke my heart.  So while he is doing very well, his struggle is real.  And as the hope builds at the new prospect that there may be a way to improve his eye sight, the anxiety about the dangers of surgery become more real.  We are once again faced with a tough decision and must lean on the medical team to decide which direction to go.  Hopefully I will have more updates soon on both these situations and hopefully I will have good news!!

To end on a positive note, Reagan started lacrosse this month and LOVES it!  She had her second game Saturday and even scored a goal!  We are so proud of her and are excited she has found something she really enjoys.